Part Five: Discharge and Recovery

One the day before Thanksgiving we had our discharge meeting with Dr. Comenzo that included a review of the results from the morning’s blood tests. Basically, all my blood counts, especially platelets and WBC, were low normal so I was fit to travel and begin my recovery at home back in Chattanooga. Apparently, I’d come through the treatment very well though I’ll admit I still felt guilty about my good fortune compared to others on my floor whom I’d met who were having a much rougher go and difficult prognosis than I.

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We arrived at home in Chattanooga at about six o’clock had a quick, spaghetti dinner (previously frozen home-made sauce of course) and I crashed. The next morning I awakened tired but not as exhausted as I thought I’d be. Pace yourselves.

The most obvious characteristic of week one was that recovery was very gradual. Each day I felt a little better and less exhausted. At first I got winded if I attempted to climb the flight of stairs to the second floor of our condominium at my usual pace. Later in the week the climb was easier, especially as we continued to take short, half-mile, walks around the community. The key, it seemed was to follow that old “listen to your body adage.” There were days when I obviously did too much that were followed by days when naps were absolutely necessary. It was very obvious that I was not in anything close to the physical shape I enjoyed before the treatment. Consequently, recovery became a process of setting new goals, some of which might have seemed unbelievably unchallenging in the past, and moving inexorably toward them.

Other slow but sure signs that something good was happening included a return of appetite even though eating large meals was out of the question. Following the instructions given at discharge, especially those pertaining to eating often since I wouldn’t eat much, was important. And even though Caesar salads, hot dogs as well as deli food that might actually be good for you and some of that fast food stuff for which I had inexplicable cravings was on my mind there was enough variety to keep me going. There is, by the way, no ban on Ben & Jerry’s Ice Cream.
As your body returns to normal you should experience less muscle soreness and fatigue. A mild exercise regimen will also help in this regard and may help break the monotony of days when you are still confined at home. Slowly but surely, your sleep patterns will return to normal except for that one little problem mentioned previously; dry mouth. Apparently, the chemo wrecks your salivary glands. Mine, at least, just seemed to shut down at night. Consequently, every hour or two I’d awaken with my tongue stuck to my palate and I’d experience dehydration worse than I ever did as a runner. Talk about cotton mouth!! We tried everything. I sucked on ice cubes (hard to sleep that way and you’ll drool on your pillow), drank water (good for a hour then you are up again cause your bladder control ain’t quite what it used to be for a while), and ate stuff from Famous Amos cookies to Jelly Bellies to gobs of peanut better (OK for short periods but try to sleep with a Jelly Belly stuck between your cheek and gums). The only thing that worked, at Emily’s common sense suggestion, was gargling very warm salt water to get that awful film out, taking a small sip of water and then using a product called Oral-Gel to coat my palate and gums. Keep that Oral-Gel nearby because you may need it often, but it does provide some relief.
About being self-conscious. I came back skinnier, balder and pale. The pale goes away pretty quickly. I’m adjusting to looking like a very slim Frank from Everybody Loves Raymond (with apologies here to Peter Boyle). Deal with it. People are going to be so glad you are back that your physical appearance won’t matter much to them. And besides, there is some mystery here. My beard stopped growing too. Didn’t shave at one point for two weeks. First time that has happened since I was thirteen. Now it is coming out on my upper lip in different colors. I thought, “What’s going to happen to my head? Will I get pimples? Will my voice change? Do I get to experience adolescence again?” I hoped not. The possibilities were mind-boggling.
Recovery: Not So Fast; Setback

I can just hear Lee Corso saying, “Not so fast my friend” to Kirk Herbstreet on ESPN. Here’s what happened. At this point, nine days after our return to Chattanooga and about four weeks

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after chemo I got a little reminder that, even though I was beginning to feel much better and see some discernible progress, all was not right with me yet. I visited my office at the university once to pick up some material and saw a couple of people there though I made sure none of them got within my new “personal space” that has a radius of at least ten feet, Emily and I had two friends over for dinner, and I went into a drug store early one morning when it was nearly empty. Somehow I caught a bug. At noon that Sunday my temperature was 99.5 and I was hot. By 4:30 p.m. it was 102.5 and we were on our way to the emergency room. Three hours and several Tylenol later it was back down to 100.5, I’d had the obligatory blood tests and chest x-ray (clear) and had begun a regimen of antibiotics that was to last a week. For the next two days my temperature stayed at about 100 and I was exhausted and hardly ate a thing. As the week progressed it settled into the 99s and by Friday it was back to normal. That Sunday, seven days and numerous visits to Ted Arrowsmith, my oncologist, after this little relapse began, I felt decent again but knew I’d lost a week of progress and five pounds. We never did find out what caused the problem.

Once again the key word is cautious and to it we can still add the fact that the progress is frustratingly slow though it is inexorable. My advice here is to set day-to-day goals that culminate in weekly and monthly accomplishments. Take walks, record your weight and build an eating schedule, lift light weights, take rides in your car just to get out even if it means just driving your spouse to the grocery store and sitting in the car (put a bag over you head if you need to) or driving to a quiet park for a walk. Get into a routine that is designed to make you stronger physically and, mentally, gets you out of the rut you are in since this whole business is aggravating.

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I’ve reflected a bit on the most frustrating part of the period between leaving the hospital and the intense part of the treatment and going back for your first checkup. Undoubtedly, it is related to the lack of control I’ve mentioned previously. You hope that everything is going well but you just don’t know and you have to wait and wait. In my case which, again, is not typical of everyone, I was feeling really well, had begun my swimming regimen again and found I was still fairly strong, was back at work part-time and loving every minute, but there was just no way of knowing how I’d fared with the treatment. The sitting on pins and needles and being thankful for every good day you have takes some getting used to. You try to balance realistic optimism with the possibility that you could still be in for more treatment. I’m sure everyone goes through this and the key, I’m sure, is to really focus on each day all the while setting some long term goals, but it is not easy.

I’m a very independent person in some ways. I seem to be mentally tough and have withstood some of life’s trials such as the death of my parents and back surgery that ended a lot of what I wanted to do in athletics, fairly well. I cannot overstate how much my family’s support and especially that of my wife’s, who was with me everyday, meant in getting through this ordeal as simple as mine was, comparatively easily. The information we received from Sloan-Kettering emphasized the role of caretakers. Aside from just being there through all the tedium that must come from watching a drugged-up human sleep some days away, caretakers are there when you are afraid, when you go through all the tests you don’t like, when you are uncertain about all those procedures and drugs and when you just need someone by your side. They listen when you are cranky and complain about the food and the boredom. They are essential. You have to relinquish some control to them. They, if they are really good as my wife was, become part of your strength. You grow much closer. It is worth it.

The reaction was incredible. I have never been so humbled or thankful for the concern and prayers of people who know me and who recognized that Emily shared this burden too, as I have been for the past three months. The point is, if you don’t tell people, they don’t know (sound like an AFLAC commercial?). People want to care. Sometimes we think it will be a bother for them so we don’t let them know about our plight-whatever it might be. Or, maybe we just have too much pride to let anyone know we need help. Regardless, we deny them the opportunity to reach out to us and deprive ourselves of the uplifting experience their support can provide. We both lose. All of us should know that it is good to help others and, if not, we need to learn. Here’s another tidbit. Cancer patients and others who have dealt with difficult diseases are everywhere. They’ve been through it. They know what to do. Reach out for their help and support them too.

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Faith and the Message

I remember reading a book on astronomy by Stephen Hawking or some other brilliant person who wrote at one point that non-mathematicians might want to skip a couple of chapters since his discussion was going to get technical. Now, I’m not going to get technical at all but I do want to say a couple of things about faith and what I’ve learned from all this. If you are uncomfortable with these types of things maybe go get a sandwich since you need to gain weight and resume your reading a little later if you are still with me after all these pages. My perspective is Christian. Persons from other faiths may still have experienced similar thoughts from other perspectives.

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What matters are people and relationships whether or not they or we change the world. We are diminished to the extent that we do not influence people positively and to the extent that we do not take every opportunity to care for one another. This applies to people with whom we interact but don’t even know. My parents taught me that this was just common courtesy. It applies to all people; rich or poor, white or people of color, and all ethnicities and religions. It especially applies to family.

Who knows? For right now, slow and steady progress to get better. After February 23 we’ll know if the Melphalan IV protocol worked. If it didn’t I’ve got nine months of Thalidomide and Dexamethasone in store for me. Regardless of my long-term prognosis, life is different now. I’m much more focused on doing what I want for myself, my wife and my family as opposed to what others expect of me than before. I’m savoring every day and looking for those simple pleasures. We are looking at retirement options so we actually get to enjoy it before time it too short. And, yes, it is time to pay a lot of people back for their kindness. I’ll keep you posted. Did you notice that incredible sunset or are you still oblivious.

One Other Thing: A Concise Overview of the Treatment

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